This is the first of the Independence Northwest Customer Stories Project, an effort we’ve recently begun in collaboration with disability community leader Molly Mayo. We believe that hearing/reading the life stories of those who receive our services will deepen community understanding of the uniqueness of essential home and community-based brokerage services. As our system continues to wrestle with changes, we must keep the principles of self-determination front and center. There’s no better example of someone taking services and running with them than INW customer Henry Meece. You may recognize Henry from many of INW’s promotional materials. His face graces our Facebook page and several of our published documents. Henry is living quite the life and has a memorable story to tell!
Henry Meece, a 25-year-old customer of Independence Northwest brokerage, can be found jam-skating at the local rink, paddling on a dragon-boat, competing in Special Olympics sports, snowshoeing, and snowboarding– when he’s not riding his skateboard to work. In March 2015, Henry was interviewed on ESPN after winning a gold medal in the 2015 X Games in the first unified dual slalom race, and in 2013 Henry’s athleticism took him to his birthplace of Korea for the Special Olympic World Games where he won a gold medal in slalom snowboarding. Henry has completed three marathons. He is proud of his athletic ability, and the interesting life that he leads. He thrives on a rigorous day-to-day schedule that he has shaped with the help of his mom, his brokerage, and his providers. He says his brokerage supports give him “something to do” and help him “stay active, make friends,” and lead an “independent life.” His mom says, “I would say of all the people we know, Henry is the most active.”
Henry was adopted by Nancy Newell and Ted Meece in 1990. His parents knew that Henry, an orphan from Korea, would probably have a disability. He began early intervention services at age 18 months and was in special education throughout school, graduating with a modified diploma when he turned 21. Although frequently in segregated classrooms, Henry experienced true inclusion in sports programs and “competed right alongside his peers” his mom states. But once school ended, without regular, structured activities, the family at first had no idea what Henry was going to do.
“Once a person is done with public school—there is nothing,” says Nancy. “It’s a very bleak outlook.” Luckily, due the advocacy of his mom and through the adult services he receives through Independence Northwest brokerage, Henry is gainfully employed and leads an active, stimulating, and productive life, which includes participation in two different community-based Day Support Activity programs. “Henry is active and integrated with these programs, but if there weren’t these programs… where is the natural inclusion?” Nancy asks. She said that policymakers should be educated about the lack of resources for adults with intellectual disabilities. “I know people that don’t live in the Portland area,” Nancy says. “These programs don’t exist in other parts of the state, there isn’t an On-the-Move, there isn’t a Creative Goals Solutions—and it’s not just Portland that has people with disabilities. It’s alarming!” And 10% of people experience a disability, she points out. She wants policymakers to understand that funding for services is vital to the life of people with disabilities after high school. “Without the funding there are no programs. Even if you could private pay, what would be out there?”
Brokerage-facilitated supports have been instrumental in matching Henry to meaningful employment. Using supported employment services, Henry has been able to gain significant experiences building an employment resume, and as a result successfully obtained two part-time jobs. He has worked at a nonprofit brew pub for three years, and at a fitness center for the past year and a half. “I like everything,” Henry says about his jobs, which total about 10 hours per week and pay minimum wage. “I want to get the money,” he says, to put into a savings account.
Nancy and Henry appreciate how brokerage supports are uniquely individualized to each person. But such open-ended options have at times made the system challenging to grasp. “It’s great to have individualized systems, but there is no uniformity,” which can make things confusing, says Nancy. “It’s a wonderful system, but how do you know about it? We’ve learned as we go along, and the information can be very difficult.” Nancy has found dealing with employment issues especially challenging, because when Henry earns an income, it affects his Social Security benefits and requires detailed documentation. “Everyone should work if they want to, and everyone should work if they can. But there are a lot of reasons not to work,” says Nancy, referring to the complex rules around earning money while receiving Social Security benefits. Before Nancy had a clear understanding of the needed documentation, which requires writing a letter to Social Security and submitting all of Henry’s pay stubs each month, she says, “I felt like a fool—the college educated mom! …You know we are doing just a bit more than waving goodbye—we’re orchestrating. We’re like an air traffic controller keeping everything in the air and trying to have everything land smoothly. So I think it is very hard to carry all this information around… and if you have one lapse,” there can be dire consequences, Nancy points out, such as the entire loss of eligibility for much-needed benefits.
Nancy and Henry describe their experience with Independence Northwest brokerage as smoothly functioning and “highly efficient. Everything behind the scenes works. The relationship between the brokerage and the providers seems to work really well. I have never had to be involved in a billing issue. Henry has never been turned away because papers weren’t signed. The relationship between the brokerage and the providers has been very strong.” Additionally, Nancy adds, “the PA [personal agent] will sit down with Henry in a way that he understands. I can be involved or Henry can get to the PA independently.” Henry has chosen to use Independent Contractors, small local agencies, and larger organizations for various services as his needs have changed throughout the years.
Nancy and Henry have begun to talk about Henry living somewhere other than his parents’ home in the near future. “These are not journeys that other people I know have taken, and the move might look different for everyone,” with options such as living in an apartment, finding a roommate, moving to a group home, or discovering other supported living opportunities.” When asked what he thought about living somewhere else, Henry said, “Good, because my girlfriend is talking about it.”
“All clients, all families are different,” says Nancy. It is clear that Henry’s unique challenges and talents could not be met with generic, non-individualized services. “It’s frustrating and complicated, yet I think it’s wonderful that all these supports are in place.”
– Text and photo by Molly Mayo